Jump to content



   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Iron Infusions - What To Expect & Any Tips?


  • Please log in to reply
6 replies to this topic

#1 KristenS

KristenS

    New Community Member

  • Advanced Members
  • Pip
  • 15 posts

Posted 01 February 2013 - 12:55 PM

I am scheduled for the first of my iron infusions on next Tuesday Feb 5th, and a bit worried. Have read horror stories of bad reactions. (but then again some people say its easy as pie!)

From anyone whos had it done, can you advise any tips?

Are you dopey at all from the benedryl? Can you go to work afterwards?

Do I need to remove my nailpolish?

Go in on a full or an empty stomach? Bring a drink or snack?

Thanks everyone!
  • 0

31 years old

Diagnosis: Severe Malnutrition due to Celiac - November 2012 via biopsy.
Severely iron deficient for 3+ years before diagnosis. No GI Symptoms. Two negative blood tests before biopsy.
IV iron infusions & monthly B12 injections


Celiac.com Sponsor:

#2 LauraB0927

LauraB0927

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 208 posts

Posted 01 February 2013 - 09:06 PM

I had an iron infusion many years ago (before I was diagnosed) and it was fine for me. No reactions whatsoever, but the benedryl did make me very tired and loopy - in fact, I was so loopy that I started hitting on the very attractive pharmaceutical rep that came into the office that day - trying to incoherently talk to him as I'm hooked up to these IV's hahaha (I was probably about 20 years old at the time). I personally would recommend taking a sick day off of work and just rest afterwards in case you notice something or dont feel well for some reason. The infusion takes a while, so bring a book or something to do - I remember it taking 3 or 4 hours but I could be wrong. They gave me something to drink, and I dont remember them telling me that I needed an empty stomach, but check with your doctor anyway. Again, it was fine for me, so I wouldn't worry too much!! Good luck!!
  • 0



"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
Raynaud's Syndrome
Iron Deficient

#3 CaliSparrow

CaliSparrow

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 250 posts

Posted 04 February 2013 - 05:32 PM

Hi Kristen,

It was not painful! If it felt at all uncomfortable, they just slowed the drip and gave me Benadryl. I took a pulpy Acai very healthy drink in with me that helped my energy levels. At the hospital, a volunteer would come by and take our lunch order (this was before I knew about Celiac).

I would just come home and sleep afterwards. You might want to take the day off? Especially if you're woozy.

I had 10 infusions within a month a few years ago because that's what my (fired) hematologist said was possible and it's difficult for me to pass up a challenge. :/

Here are the things I took away from it:

1. Be sure to stay for 30 minutes after the first infusion is finished because, if you have a reaction, you'll want to be in the office rather than speeding down a freeway trying frantically to get home to the bathroom! (Or wear a diaper.)

2. A simple remedy to having a reaction is to slow the drip. The nurses at the hospital where I received the remaining 9 infusions seemed to be very well aware of this. They were great! My first infusion took 1 1/2 hours (that's way too fast but not sure how much iron you're receiving). My subsequent infusions took 4.5-6 hours.

3. Do not aim for 10 iron infusions within a month if you react to the first one. This is not a competition. Your body is telling you something.

4. Benadryl is nice and makes the ride smoother.

Anyway, do not fret. Watch a comedy tonight or do something fun. Take food with you. I would make it a day once I understood about taking it slowly. Surprisingly, I never watched the movies I had downloaded but would end up chatting with the people receiving chemo. I never met a rude person there. Nurses were great/patients were great.

Let us know how it goes for you & good luck!

Take care,

Cali
  • 0
Last glutening: 12/28/13 (long time FOR ME!)
April 2014: no more reintroducing foods, not rocking the boat, no studying (except during insomnia)
March 2014: Reintroducing intolerant foods. Yolks & banana are a "no". Dairy NO
Year 2: Mental clarity improving. Hello to normalcy.
October 2013: Functional Medicine doc ref to cardiologist for possible sick sinus syndrome (deadline May)
September 2013: 55+ food intolerances, mercury poisoning, sIgA 50, leaky gut, adrenal fatigue, hormone disruption, ferritin 7, low Vit D, low Vit B6
January2013: Dairy-Free, Soy-free
November 2012: Gluten-Free
Year 1: Migraines resolved, OCD diminished, Change in skin texture, EyeBrows lifting & eyes bigger, Better memory, Better cognitive function, Better problem-solving capabilities, Lower anxiety level, Better outlook, Arrhythmia reduced, hope

#4 KristenS

KristenS

    New Community Member

  • Advanced Members
  • Pip
  • 15 posts

Posted 05 February 2013 - 06:33 PM

I had my infusion today and it was easy as pie! I worried for nothing, and it went perfectly smooth. I brought juice coffee and snacks which were such a good idea, thanks guys! They had trouble getting the IV in, but the third time was the charm. They gave me 200ml of Venofer. They did a test dose of 20 over a half hour and took my vitals every ten minutes. I didn't react at all, so they didn't have to give me benedryl. After my test dose I was fine so they infused the rest of the bag over 2 hours, then followed with a half hour of saline. I had no reaction whatsoever, so after four hours in a recliner with a warm blanket and my iPhone and ereader they sent me home. I came home and took a nap, and I feel great! My appetite is a bit strange, and I have a funny taste in my mouth, but no side effects so far. Will keep you posted if anything changes. I am scheduled for another bag in two weeks, then a month after that. Hopefully this gives me a boost, I would really enjoy being able to walk the dog an take the stairs again!!
  • 0

31 years old

Diagnosis: Severe Malnutrition due to Celiac - November 2012 via biopsy.
Severely iron deficient for 3+ years before diagnosis. No GI Symptoms. Two negative blood tests before biopsy.
IV iron infusions & monthly B12 injections


#5 TNfarmgirl

TNfarmgirl

    New Community Member

  • Members
  • Pip
  • 4 posts

Posted 19 February 2013 - 06:13 PM

Hello,

I'm new to the circuit, but I can give you a view on iron infusions with the chemical called Faraheme.  I received two IV injections over a week apart.  The nurses will establish an IV line and administer the drug through the line, slow push.  I relaxed and read post injection.  They will monitor you for at least 30 minutes post to watch for reactions.  I had very good luck with the injections and felt much better within 3 weeks as far as energy levels and stamina were concerned.  The only drawback I had with the injection is that I couldn't have an MRI (the results could be inconclusive for 90 days after iron therapy).  I needed one for a possible orthopedic procedure and had to wait.  I did not have benedryl pre-injection.   The Faraheme has a very low reaction incidence.  Good luck!


  • 0

#6 CaliSparrow

CaliSparrow

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 250 posts

Posted 21 February 2013 - 08:37 AM

I had my infusion today and it was easy as pie! I worried for nothing, and it went perfectly smooth. I brought juice coffee and snacks which were such a good idea, thanks guys! They had trouble getting the IV in, but the third time was the charm. They gave me 200ml of Venofer. They did a test dose of 20 over a half hour and took my vitals every ten minutes. I didn't react at all, so they didn't have to give me benedryl. After my test dose I was fine so they infused the rest of the bag over 2 hours, then followed with a half hour of saline. I had no reaction whatsoever, so after four hours in a recliner with a warm blanket and my iPhone and ereader they sent me home. I came home and took a nap, and I feel great! My appetite is a bit strange, and I have a funny taste in my mouth, but no side effects so far. Will keep you posted if anything changes. I am scheduled for another bag in two weeks, then a month after that. Hopefully this gives me a boost, I would really enjoy being able to walk the dog an take the stairs again!!


I'm so glad it went easy peasy :). It sounds like they know what they're doing!
  • 0
Last glutening: 12/28/13 (long time FOR ME!)
April 2014: no more reintroducing foods, not rocking the boat, no studying (except during insomnia)
March 2014: Reintroducing intolerant foods. Yolks & banana are a "no". Dairy NO
Year 2: Mental clarity improving. Hello to normalcy.
October 2013: Functional Medicine doc ref to cardiologist for possible sick sinus syndrome (deadline May)
September 2013: 55+ food intolerances, mercury poisoning, sIgA 50, leaky gut, adrenal fatigue, hormone disruption, ferritin 7, low Vit D, low Vit B6
January2013: Dairy-Free, Soy-free
November 2012: Gluten-Free
Year 1: Migraines resolved, OCD diminished, Change in skin texture, EyeBrows lifting & eyes bigger, Better memory, Better cognitive function, Better problem-solving capabilities, Lower anxiety level, Better outlook, Arrhythmia reduced, hope

#7 lynnieloo

lynnieloo

    New Community Member

  • Members
  • Pip
  • 7 posts

Posted 21 February 2013 - 05:16 PM

I am scheduled for the first of my iron infusions on next Tuesday Feb 5th, and a bit worried. Have read horror stories of bad reactions. (but then again some people say its easy as pie!)

From anyone whos had it done, can you advise any tips?

Are you dopey at all from the benedryl? Can you go to work afterwards?

Do I need to remove my nailpolish?

Go in on a full or an empty stomach? Bring a drink or snack?

Thanks everyone!

I hope your iron infusions are going well.

 

I had the first try iron infusion around 2005 - had an anafalactic (sp??) response to the test dose, BP dropped to 20/40 and they nearly lost me - it was the kind of iron that takes awhile to infuse.  So, I didn't have that infusion.

 

In May of 2007, I went for another try because there is another formulation that they don't have problems with and it takes a lot less time for the infusion - I went once a week for 5 wks.  I was very sick for about 3-5 months after, but I cannot say with certainty that it was the iron.

 

Because of the celiac, which I was just diagnosed with last week, the iron infusion didn't really do much good.

I am actually considering going for this again after I've given my body time to heal so that it can absorb the iron properly.

 

I wouldn't go on an empty stomach.  My dr's office had snacks and beverages, but nothing gluten-free, so BYO!

The benadryl didn't make me dopey and I could go about my daily routine upon leaving the dr's office.

Don't even think about taking off your nail polish!

 

How long have you been on the gluten-free diet?  Did your dr. recommend the iron infusion?  I'm wondering at what point to revisit this.


  • 0


0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: